| Joined: Dec 2021 Posts: 5 Member | OP Member Joined: Dec 2021 Posts: 5 | First of all, thank you so much for the support and resources on this site. I am so very grateful.
My DH has a white lesion (no bump or thickening of the skin) on the bottom of his tongue that does not heal after accidental biting (or burning) 6 months ago. His biopsy result is mild atypia. His oral/maxillofacial surgeon (DDS & MD) recommends laser ablation in January 2022.
Could someone please shed lights on:
1) What is mild atypia? Is it the same as hyperplasia? 2) What is the recurrence rate? Increased risk of cancer? More follow-ups needed? 3) What should we expect from the laser ablation?
I am not even sure our dental insurance will cover laser ablation on this procedure. We're told this procedure will not be billed to regular medical insurance. We are very confused at this point.
Many thanks.
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| | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | First, there are a couple types of pathologist that could have read the tissue sample. There are those that look at the vast majority of biopsies form all parts of the body and the ones that specialize in looking at oral tissues. In general either type can tell you if it's cancer. But the oral pathology community is much more able to parse the nuances of cellular changes that are unique to the oral environment.
Without seeing the report, my assumption is that when they call it atypic that the cell/s is/are changing in a way which they either cannot define adequately, or the changes are minor. But things might be evolving, or that a general pathologist read it and they are not accustomed to looking at abnormalities in oral cells. That's probably not very helpful as an answer. But I don't think calling something atypical is helpful either. All they have actually said is its not normal.
The good news for now is that isn't a finding of obvious malignancy. And that they want to deal with this through a laser ablation would mean that they have decided that it is superficial and not invasive. Meaning that a technology like laser can be used to burn off just a few surface cell layers of tissue and eradicate it all. That's a common procedure particularly with things that are not giant red flags. Leukoplakia is commonly removed in this manner as only about 25% pf them progress to dysplasia and only 25% of those go from dysplasia to malignancy.
Once this procedure is done, the tissue will be raw and sore, but heals up through secondary intent on its own. There is not suturing and the like because it's a superficial tissue removal. No one can say if it will return or not, this will requires monitoring to ensure that if it does it is again dealt with promptly before it has a chance to prosper into something more.
Dentists and insurance are always a problem. They don't like to take medical insurance because of the paperwork, ditto Medicare. It's one of dentistrys shortcomings, which I will just say starts from their main lobbying professional society the ADA (who lobbied hard not to have dentistry covered by medicare, the age group that needs coverage more than any other. They spent millions of dollars and donations to politicians to see that it wasn't part of the Build Back Better plan. as did the Academy of General Dentistry.) and this isn't likely to change. This entire reply may be less than helpful, but there are no absolutes to comment on. I'd be happy to answer any further questions after the procedure if you post again. Brian
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | 1 member likes this:
Need_Info | | | | Joined: Dec 2021 Posts: 5 Member | OP Member Joined: Dec 2021 Posts: 5 | Brian,
Thank you so very much for taking your time out to provide such detailed information. I really appreciate it.
The oral biopsy was read by the pathologist specializing exclusively in the area of Oral and Maxillofacial pathology.
It seems to me that there’s a grey area on the classification of atypia in Pathology. Therefore, I agree with you on the exact atypia diagnosis in this case. Mild Atypia diagnosis was conveyed to us by the Oral & Maxillofacial surgeon (DDS & MD) over the phone. We will find out more in the treatment plan consultation two weeks from now.
I am totally aware of ADA’s political lobbying and absolutely concur with you on the negative impact it has on mainstream Americans. We are just amongst the hard-working, middle class Americans who have been dotting the i's and crossing the t's all their lives. While the biopsy result eases our mind for the time being, treatment cost will be another hurdle to overcome.
The Oral & Maxillofacial surgeon is very professional and communicative. On the other hand, my question is:
Is OMS the best doctor performing the laser ablation procedure vs. ENT surgeon?
You have addressed every concern I raised in the thread. Over the past two years, I’ve pretty much given up on finding random kindness. Hence, I cannot express my gratitude to you enough.
Thank you so much.
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| | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | I'm happy to help. Yes, I think that staying with an oral surgeon to do this is the right idea, outside of the potential to have insurance pay for it if you see an ENT. Not many otolaryngologists use laser for anything, so what you would have done there is a scalpel removal of the tissue. The outcome would still be the same, but one difference is you would have the tissue for additional pathology work if needed. The laser is just going to vaporize whatever it burns off. And the skill level of the ENT doing a very thin cut to remove this might be more difficult, so it might be a deeper removal of tissue with a suture or two. But insurance would pay, so if that becomes the issue the outcome is the same at either kind of doctor. The only drawback to the laser that I can think of would be that with no removed sample that path lab won't be able to tell you that they got it all with clean margins, but Im sure that they will burn an area at least 5-10 mm beyond what is visible to ensure complete elimination. Either way this is a very simple laser procedure, and I don't believe it will be very expensive of take much time.
Having things heal by secondary intent can be uncomfortable for some people depending on where it is, how much food and other things come in contact with the area. The good news is in most cases we are only talking about a week of healing probably. I had a large section of my neck, when I had my mandible replaced with my fibula in a free flap procedure, not be covered with new soft tissues. It was a pretty deep area that had to heal in on its own in over a month and a half. That is the worst kind of "healing by secondary intent" when its not just superficial, but you are waiting for 3/8 of an inch or more of soft tissue to granulate back into the area.
As to random kindness I agree. I think that as a society we have drifted off into a place where even random civility, let alone kindness can be rare. But the people that help others as volunteers at large inside OCF, and posters to OCF support questions, are a special crowd. My only trouble is finding enough volunteers to help us do some of the things that are necessary to serve the population that we do. Again it takes someone special to want to volunteer; and we have several areas where we haven't been able to find help for quite awhile. Please report back on how all this goes. I'll be curious to hear.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | 2 members like this:
ChrisCQ, Need_Info | | | | Joined: Dec 2021 Posts: 5 Member | OP Member Joined: Dec 2021 Posts: 5 | Brian,
Many thanks again for your thoughtful feedback.
I am especially grateful that you completely covered the pros and cons of OMS vs ENT, in addition to the expected laser ablation healing time. Your resourcefulness along with knowledge is very much appreciated. I will make sure to ask the OMS regarding how assuring the laser ablation will result in complete elimination of the mild atypical lesion on the bottom right tongue.
My husband and I have been married for three decades. I have to exit the work force at a younger age, as I suffer from many chronic illnesses with prospective pending surgeries – none of which is contributed by diet, life style, or environmental factor. Suffice it to say, he’s been taking great care of me both physically and mentally. This oral lesion diagnosis is his first negative health event.
Being foreign-born and a transplant living in U.S.A. for most of my adult life, I find it difficult to navigate the healthcare system on the stateside. I know several MD’s as well as the former health insurance executive, Wendell Potter are very frustrated in this regard. Exhausted, overwhelmed and depressed that I am having to deal with my own, my husband’s as well as my dear friend’s healthcare and access.
I am very glad to stumble across this forum. I appreciate all the volunteer work and efforts behind the scene. I am sorry to hear the on-going need for volunteer support. In light of current situations, many people are so over-extended and burned out from working remotely.
I hope my response reaches you in good spirits and good health. Thank you so very much from the bottom of my heart. I will certainly report back with any new findings.
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| | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | I have been exchanging Christmas wishes with a few patients and survivors this morning, unfortunately I know a large number of this group who will be spending this day alone. It’s not widely discussed, but our cancer has one of the highest suicide rates. The holiday season for those without a family/friends support system around them are highly vulnerable to depression. It’s also the season with the most incoming contacts from newly diagnosed patients to OCF. But last nights and this mornings conversations reminded me of how many people, women particularly, have their cancers first discovered on the ventral side of the tongue, with no risk factors in their life style, a a small white lesion. It’s a large number.
People assume that as you said in your first post, that they bit or burned it and the white tissue is a result. The tissues of the mouth heal very rapidly, faster than almost any other in our body. Mother Nature designed things this way since they suffer a huge amount of insults, and they need to be replaced quickly and frequently through apoptosis. Things that stay around for protracted periods are always suspect. I failed to ask you about any risk factors like tobacco use your husband might engage in. And that is an important question. It’s almost impossible to bite the underside of your tongue even if you try. The borders of the tongue yes, not the underside. Burning it on hot pizza cheese (the most common culprit) is possible but not the first area that would get burned. Smokers leukoplakia is very common, and path result are often, if done early, atypical, or the pathology will clearly say leukoplakia. So does he have any risk factors such as tobacco or alcohol use? You can still get these lesions if not, but they arise from a different issue. And I didn’t ask how big it was or if during the time that he has been aware of it it has changed size. I also did not ask how the biopsy was performed. As you can see these conversations today have me second guessing how well I replied to you.
There are some biopsy techniques like brush cytology, that are far less accurate at obtaining a good sample to be evaluated than an incisional or punch biopsy. In the later, all the layers of cells, their architecture from surface to deep are all in place, there’s a lot more information available. A brush collection system harvests a sampling of loose cells, more like scrambled eggs. A person examining them has little idea where in the hierarchy of things any atypical cell came from. It’s a less than ideal technique, and it’s generally used as a preliminary screening, that if positive or atypical finding, MUST be followed by a conversational incisional biopsy. General dentists use it a lot, they loathe to pick up a scalpel or deal in things that involve any blood.
Bottom line, there’s some “we don’t knows” here. If the area is removed by laser, everything may be fine and it will be gone. But there is no remaining tissue removed to send for pathology again. Which should be done to a different pathology lab than the first, to confirm margins and confirm the original finding. This is most likely over thinking all this. It’s probably some simple pre cancerous change that will be 100% eliminated by the laser. But if I have given you incomplete advice and it returns, you are back at square one with something that needed a deeper removal, and I have helped you less than you think. You can discuss all this with the oral surgeon who is ultimately the person you need to have confidence in and has actually seen the lesion. I’m a stranger on the Internet that has not examined him, nor seen the pathology. We all want to get this right.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | 1 member likes this:
Need_Info | | | | Joined: Dec 2021 Posts: 5 Member | OP Member Joined: Dec 2021 Posts: 5 | Hi Brian, Thank you so much again for being so proactive and caring.I highly empathize with how those survivors and patients feel during the holiday seasons. We don’t have any family’s presence on his side (alienated due to his marriage to me) and mine is located overseas. In light of our current situation, we are surviving on our own the best we can. With my own chronic illnesses, I have my bouts of anxiety and depression. I can more than relate and would certainly appreciate the value of greetings you’ve exchanged with patients and survivors. To answer your questions, my husband never smokes his entire life and rarely drinks. The last alcoholic beverage he consumed was over 10 years ago. The white lesion was near his right side of the tongue adjacent to Tooth#32. I just realized I failed to describe the lesion location properly – it’s towards the underside but not completely at the bottom. I concur with you that the healing should have been completed soon after his accidental injury. The lesion, when it initially happened, was about 1” horizontal lengthwise. Over 6 months, it got a bit smaller gradually and upon that point, I urged him to get it checked-out after perusing the research paper on Wound Healing Problems in the Mouth https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5089986/The biopsy procedure performed on him was dental code - D7286: incisional biopsy of oral tissue-soft. I cannot express how grateful I am to you being so resourceful in assisting me in this matter. The details and the time you spend on my thread are beyond the extent of my gratitude. I am an introverted empath and was involved in STEM (my previous long-gone working life). Oftentimes to my own detriment, I wear my heart on my sleeve to others; sadly, in the end, no one is around for 'emotional' support. So again, my enormous gratitude. You have made our Xmas so much more special and memorable.
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| | | | Joined: Dec 2021 Posts: 5 Member | OP Member Joined: Dec 2021 Posts: 5 | Update ~
My husband had received the laser ablation to destruct the atypia leson. He was told to have a follow-up in 4 months. At that point, an image will be taken and then a baseline will be accessed.
His surgeon said there's no need for further biopsy, as she highly suspects it's due to the chronic trauma sustained near Tooth #32.
I am not sure if that means more follow-up appointments after the baseline is assessed.
As Omicron is ramping up in our community, we're exhausted and overwhelmed.
Stay well and stay safe, everyone.
Thanks for the resources and support.
Grateful for this Forum. Pay kindness forward.
| | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | Well the good news is that what was a visible lesion is now gone and vaporized. That likely translates into no longer a threat of becoming something more.
If the doctor is right and this was caused by chronic irritation, and the source of the irritation is not eliminated, it’s likely to return down the road. So every few years this could be a reoccurring exercise. It might be prudent to look at that adjacent tooth and grind and polish back the portion of it irritating the soft tissue to stop any recurrence.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
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